Contribution
I absolutely agree. There is an unnecessary burden on families to start off with, and when the appeal process can take months and it is difficult for families to secure representation—they may end up representing themselves—that causes them further anxiety. I agree that there needs to be a review of the whole system, because it is a further bottleneck in an already very stressful situation for families. I will come to an example of a family I am trying to assist in that regard.
In many cases, decisions are overturned and the status quo is restored. We must be honest about what is driving this. It is the same culture of cuts and austerity, sweeping across this Government and the previous one, that is to blame for the crisis. Independent analysis shows that CHC spending decreased by 42% in 2024 compared with previous years, even as need continued to grow. That is not because people are suddenly less ill, but because access is being constrained.
Investigations have also revealed that private companies are being contracted to review CHC eligibility and, in some cases, to reduce care packages, raising serious ethical concerns about profit being tied to cuts in vital care provision. A system where decisions are not always driven by clinical need but by cost containment will inevitably fail to protect and care for some of our most vulnerable individuals.
My constituent Daniel has experienced the injustice of the CHC process at first hand. He suffers from severe learning difficulties, autism, anxiety and behaviour of distress, and is cared for by his elderly parents, Linda and Dave. In order to receive the proper care, Daniel is supported every day by six personal assistants, all of whom are being paid thanks to CHC funding. After an annual review in January last year, it was confirmed that his condition had not changed and therefore his funding ought to continue, and yet, since a spontaneous and unwarranted review of the decision, Daniel’s eligibility has been under excessive and unreasonable scrutiny. The reassessment directly contravened the national framework for CHC, which states that a full reassessment must be arranged only if there is
“clear evidence of a change in needs to such an extent that it may impact on the individual’s eligibility”.
The saga was concluded two weeks ago when, despite providing no clinical rationale for the “significant change” in Daniel’s medical needs, the care board revoked his funding, leaving his parents to foot the bill for his care. For more than a year, Linda and Dave have carried on their fight against the care board’s impropriety, which has understandably come at a great financial, emotional and personal toll, all while continuing to care for Daniel. Unfortunately, Daniel’s story is neither exceptional nor surprising. It shows how many of those reliant on Government support are being stripped of it in the blink of an eye.
The stories of Daniel and so many others show exactly what is wrong with the system. Since 2017, despite an ageing population and increasing complexity of need, the number of people eligible for CHC has fallen by more than 9%. Over the same period, the proportion of people found eligible after a full assessment has dropped dramatically, from around 31% to just 18.6%. That means that more people are being assessed, but fewer are receiving support.
For families, that often means a gruelling process, characterised by a mire of lengthy assessments, appeals, delays and uncertainty, at the most difficult time of their lives. Confusion, exhaustion and distress are mainstays of that process. Even for those who are fortunate enough to be granted CHC funding, it can be withdrawn upon review, leaving families in a state of permanent anxiety that they could be plunged back into crisis at any moment.
Behind every statistic is a family caring for a loved one with dementia, a neurological condition or even a severe disability—a family forced to give up work, drain their savings or even sell their home, all while navigating a system that is rigged against them from the start.